Month: May 2015

My National Spelling Bee

“Dad, stop yelling at the tv,” my daughter said.

“It’s a sporting event, I’m allowed to yell at the tv during sports.” (Is spelling a sport? Well, it is on ESPN therefore it must be. They show car racing, golf, dog contests, and spelling bees, so who am I to argue. Everything is a sport these days and if it is a sport, I am allowed to yell at the contestants.)

“You don’t have to be so mean.”

Okay, she had a point. Siddharth had just misspelled a word I had never heard before. He couldn’t decide if it was an i or an o, he selected the wrong letter, the lady with the hand of death rang the little bell indicating that Siddharth’s day was over, and I enjoyed the moment, “Sit down, Siddharth,” I yelled at the tv. “Go see your momma on the couch.” Siddharth walked across the stage with his head down and met his family on the couch where ESPN provided cookies and a post-contest interview. (I’m not kidding. “So how does it feel to chose the wrong letter?”–“I was confused by the German root of the word and the Latin origin.”–“That’s okay, Siddharth, have a cookie as we all enjoy the schottenfreude of this moment.”)

Siddharth is a 12 year-old kid who had managed to make it all the way to the finals of the National Spelling Bee. He probably spent hundreds of hours studying the origins of words, the roots, and tried to understand why English is such a mess. (My theory on English is that it is the ultimate pirate language. It has raped and pillaged all the other weaker languages and now if a bit of a mess.) All of Siddharth’s hard work took him from some small southern town to the lights and pressure of the National Spelling Bee, it really is an impressive feat and the prototypical in American Dreaming: The kid with immigrant parents, works hard, overcomes everything placed in his way, and becomes the national spelling bee champion, or not.

After Siddharth got knocked out, I tried to tone it down a notch or two, but I couldn’t resist rooting against Gokul. Gokul was the kid who spelled fast, wore his high tops untied, and sat while the other kids spelled like he was made of butter and the chair was making him melt. (Last year, Gokul got knocked out because he couldn’t spell Keirkegaardian. Even my spell check knows that word doesn’t exist.) This year, he spelled each word with an attitude that said both, “My parents are making me do this” and “I’m so smart, I don’t have to study.” He spelled the words so well that he ended up tying for the victory. (Sports that end in a tie are not real sports in my opinion. That’s right, hockey and soccer, I’m talking to you.)

Maybe I’m bitter because every spelling contest I have ever been in ended in the first round. I’m one of those people who cannot see words in their heads. I know there are ways to visual words, but it has always been easier for me to write the word down and then say, “That isn’t right.” In spelling bees that isn’t allowed. In spelling bees it is called cheating. Call it whatever you want, it made me hate the one time each year my teacher would have us line up around the room and ask us to spell a word. I always seemed to know how to spell the rest of the words given to my classmates, but when it came time for me to spell, I choked and ended up walking back to my desk like a dog that just got caught eating a shoe.

These days the National Spelling Bee is dominated by students with difficult to pronounce names and lots of spare time to study. These kids must carry around a dictionary everywhere they go and then when they aren’t looking up English words they must work on memorizing Latin, Greek, German, French,and Fijian.  (Yes, there was a Fijian word, and the girl spelled it correctly. Which blew my tiny mind.) I doubt the National Spelling Bee kids know much about the Kardashians, but I’ll bet a dollar they can spell Kardashian without Googling it. (Unlike me.) Their days are probably filled with homework, school work, and studying. (Homework and studying are different things. You don’t always have homework, but you always have studying. I learned this lesson in my 5th year of college.) I used to get annoyed when the kids would ask all the questions about word origins, alternative pronunciations, and the rest of the technics which seemed like stalling to me. Now, I can see their minds working. They are really trying to figure out if the second syllable is Latin or German.

What really impressed me was that they all seemed to be good sports about everything. They honestly looked bummed when   a fellow contestant couldn’t spell “aflag” which isn’t pronounced anything like it is spelled. They clapped for the contestant’s progress when the bell of death was dinged and they performed valiantly under pressure. I wish I could say the same for my behavior, but we all need room to grow.

The Bends

When will it officially be over? July 7th? That is the day scheduled for Dylan’s full-body CT scan. Or, is it over now? With most illnesses it’s easy: You get sick, you get better, it is over, but cancer lurks in the dark.

The past two weeks have been strange. I have returned to work, Dylan has recovered slowly on his own, and all of us are trying to figure out when we can release the breath we have held for three months. It feels like I have been underwater the whole time and have suddenly surfaced. It hasn’t been easy. The tough part is over, the mental struggle has begun.

Wednesday, Dylan and I traveled to Seattle for a scheduled appointment and his final LP (lumbar puncture, aka a spinal shot, aka the thing that always takes two hours longer than promised). Two weeks ago, when Dylan rang the bell signifying the end of treatment, we didn’t know about the final LP so it we were a little surprised we had another treatment, but like everything else on this strange trip we showed up for the appointment knowing it had to be done.

We arrived at the Swedish Cancer Center early and Dylan slept in the car as I listened to the radio. He had been unable to sleep at all the night before. He was tired, he couldn’t sleep, and he didn’t want to talk about it. At 9:30 we wandered over to the second floor to get the blood draw. The office on the second floor is exactly what you think it would be, lots of bald people waiting silently in a large room with a big fish tank. One by one, names are called out, the patient stands up in that slightly bent way most people undergoing chemo do, and walks over to the nurse who takes them into a tiny area away from view. The draws are quick and the results are done within 30 minutes, so after Dylan’s draw we headed up to Dr. Pagel’s office on the 10th floor.

Upon arrival, Sonja (Dr. Pagel’s nurse) hustled us back to the examining room where his vitals were checked and we talked about how things were going. He didn’t say much. It had been a tough few days. Dylan had to have a transfusion of platelets and red blood last week, but our expectations for a “good” day have changed a great deal in the last three months. Sonja remarked that Dylan looked better than he did last week. She did her best to pick up his spirits but the combination of lack of sleep and unstated dread over-ruled any positive energy anyone placed within ten feet of Dylan.

The Nurse Practitioner came in to look under Dylan’s hood and kick his tires. She remarked about how well he was recovering and then the blood results came in and they were FANTASTIC. Dylan wouldn’t need to get a platelet transfusion. He could stop taking is antibiotics and he didn’t need to get any more shots in his belly each night…he was done with all that, and then I asked, “When you say, ‘Done,’ what does that mean?” She wasn’t sure how to answer. “We have two months before he has his full body CT scan. That’s a long time to wait…what does your experience tell you? Did this work?” Dylan shook his head and plugged his ears, he didn’t want me to ask these questions.

She paused and then said what one might expect, “We can never be sure…yada yada yada…but the way that everything has gone points to a successful treatment. You need to keep an eye on things in the next two months but you can start to do things you did before.”

“He can lift weights?”

“Yes, don’t overwork yourself, start slowly. Your bone marrow is young and has recovered remarkable fast. All indicators are that you will have a full recovery.”

I could have danced around the room at that time, but my German blood only allowed me to say, “Good.”

No doubt the next two months will have some challenges, but if there is one life lesson to take away from all of this it is to live in the now and not to worry about tomorrow. We can spend the next two months treating Dylan like a precious piece of china, or we can live life fully and enjoy these two months of unknown.

We left the office and headed over to the outpatient surgery area on the 4th floor. We got in the elevator with a few other people and pushed the four button. A doctor got on and pushed the button for the 12th floor. The familiar light illuminated at the 12 and I felt an emotional tug, Dylan must have felt it also because as the elevator started up, Dylan tapped my arm, “Let’s go up to the 12th.”

The doctor overheard him, “They really like that,” she said.

So we went up to the 12th. To where this whole thing started. To where we spent all those days. We got off the elevator, turned the corner toward the nurses’ station, and saw Nicole. She saw Dylan, “Oh my gosh,” she shouted and then this happened.

Nicole giving Dylan a little love.

Nicole giving Dylan a little love.

And that’s where I’m going to leave it, on the 12th floor of Swedish hospital. The hospital where Howie Myers was born and Dylan was cured of cancer.

The Stars of this three-month journey

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Dylan and Joanna.

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Kelly reads Dylan’s armband while Gretchen matches the chemo.

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Shantel, Dylan, and a vomit bag.

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A Thousand Tiny Scratches

Today is exactly three months from the day we began this journey. Three months none of us will ever forget. Three months filled with moments of terror, joy, and pain. Today, around 3 PM, the last few ounces of Etoposide will drip out of the clear bag, flow through the plastic tubing, move past Dylan’s rubber port, and enter his blood stream an inch or so above his heart.

When this started Dr. Pagel said, “This will take four to six months.” At the time, it seemed unendingly long, but now I am amazed at how quickly it has passed. Monday morning I will be back at work and life will return to something called normal, but life is never normal. There will still be doctor’s visits, blood draws, and the month-long wait before the CT scan tells us if all of this worked; that fear sits close to the surface.

On Wednesday, three days into this stay, Dylan had gained 10 pounds. Rapid weight gain was the first sign that Dylan had cancer. When Joanna came around for her rounds, word had gotten out about his weight gain. She started her visit with Dylan in the same direct fashion that only someone who has done a difficult job for years can muster, it is a directness all of us have come to appreciate, “So dude, you’ve been gaining weight. Don’t worry, it isn’t your cancer returning. We’re pumping you full of fluids. We’ll slow it down.” Relief.

Our last stay has been marked by lots of statements that begin with, “This is the last time we will…” The last spinal shot, the last bag of Ifos, the last round of Cytarabine, the last night in Swedish, the last morning. It is the last for us…if everything goes as planned. Around four PM today, Dylan will ring the bell and we will celebrate. We will go home. Dylan will be very sick for a few days and then he will get better. The blood draws will stop. The antibiotics will be gone and his hair will grow back. Our personal journey will be done, but the 12th floor at Swedish will be full.

Tuesday morning, just after waking up, I sat staring at the floor. (This is what people who blog do. They look at the floor, or their belly button and then write about it.) It is easy to forget how pervasive cancer is in our world until you begin to think about it. Swedish is just one hospital in one city. Seattle has three or four more hospitals treating cancers. Each city has at least one cancer care facility and each of those hospitals is filled with patients. The number of people who have been in room 1266 alone is staggering. I know this because of the thousands of tiny scratches in the linoleum. The marks of people passing through this room are not recorded anywhere, there is no wooden beam to carve “Dylan was here” into, but there are accidental scratches and dents in the room that hold the story of cancer.

Hospitals are full of impermanent things. Empty bags of saline are tossed out. Purple rubber gloves are used once and then rolled into a ball and disposed of. Little blue plastic caps connecting the IV lines are sanitized and dropped in the trash. Everything in a hospital is designed to avoid decay. Use it, toss it out and nothing can decay, but beneath the surface of impermanence are the thousand scratches of lives that have passed through this place before we arrived. Our story is personal, but sadly, it is not unique. Many of the scratches have been left by people like us, the survivors, but there are also the many scratches left by people who did not survive. We are the lucky ones. The ones who will get to go home and watch a bald head grow hair, the ones who will remember Swedish hospital as the place where Howie Myers was born and my son was cured of cancer.

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